Saved from the stigma

He was suicidal before the operation that changed her life. She could live with the knowledge she was HIV-positive but not with the side effects of the treatment she was receiving for it.

The anti-retrovirals (ARVs) intended to save her life had caused her stomach and breasts to swell and her face, shoulders, buttocks and arms to wither away. What's worse, she was shunned as a result.

"These abnormalities can cause great discomfort but they're also an indication that patients are on ARVs, which means members of their communities know they're HIV-positive.

In many parts of the country this is still a major cultural taboo," Doctor Gabriel Doucas (36), a Johannesburg plastic and reconstructive surgeon, says of the dilemma people such as Thembi* face. Although he and other doc-tors are able to help, the operations required are usually beyond the means of ordinary people.

They can cost up to R50 000 – and medical aids don't pay because the procedures are regarded as cosmetic. "But during Lipodystrophy Week, Dr Doucas and the team in theatre 14 at Soweto's Chris Hani Baragwanath Hospital offered their services free.

" These do-gooders are pooling their expertise and donating their time to help repair the abnormalities of patients with lipodystrophy, a side effect of anti-retrovirals. The medley of medicines can cause fatty deposits to build up in areas such as the breasts and abdomen, while fat disappears from other areas including the face, shoulders, arms and buttocks.

Through surgery the team is trying to help HIV patients improve their self-esteem and prevent their communities from shunning them. They also want to make people aware there are ways of correcting lipodystrophy without stopping the medication that can prolong life. Some people become despairing enough to consider doing that. Before the operation Thembi confessed she often hadn't taken her antiretrovirals.

"We're going to conduct liposuction on her stomach and redistribute the fat to fill the areas on her face where the fat has disappeared," Dr Doucas says. "That's the first step. She'll also need a breast reduction and we'll see if we can move some fat into areas like her buttocks. For her this is a cultural decision because buttocks are very important in African culture, and because hers have withered away like this she can't find a partner.

" Apart from having fuller buttocks, hopefully making her more acceptable in her community, the reduction of her breasts will also make it easier to find bras and will reduce her chronic back pain. "Most important is her face. With fuller features people won't immediately know she's HIV-positive and they won't turn their backs on her. She also won't feel the need to stop taking the vital medication that causes the condition in the first place," he says.

IT'S hard work. The surgical teas had to accommodate as many patients as they could during the theatre time the hospital donated during Lipodystrophy Week. "It began as a challenge by colleague in 2009," Dr Doucas says in his plush, private practice offices at Netcare Links-field Hospital on the night before Thembi's operation.

"She dared me to put my skills as a plastic and reconstructive surgeon to good use by helping people suffering from this condition. As if HIV isn't bad enough, now they also have to live with abnormalities and the social stigma attached to the disease. I couldn't say no. "But don't think I did this on my own – without the generosity of the hospital, our corporate sponsors and the doctors and surgical team members who donate their time to the project, Lipodystrophy Week wouldn't exist." "It's been held twice a year since 2009.

During Lipodystrophy Week last month Dr Doucas and his team helped 17 patients and he's hoping to better that number during the next one in November. He works side by side with doctors Elias Ndobe, Anton Potgieter, Craig Wittstock, Chetan Patel and Marshall Murdoch. On top of the anaesthetists, registrars and nurses from Charlotte Maxeke and Chris Hani Baragwanath hospitals volunteer to help.

"We can't force anyone to take part in the surgery so all the help we get is purely voluntary and out of the goodness of their hearts," Dr Doucas says. But without equipment the skilled surgical teams would be left high and dry. Johnson & Johnson and Conquest Surgical donate all the equipment, materials and disposable needed in theatre.

Patients have to go through a rigorous selection process and surgery is seen as a last resort. "These abnormalities can sometime be corrected by changing the combination of ARV drugs patients are on," Dr Doucas says. "They also have to consult their HIV clinician before coming to us because that's who will prescribe a new combination of drugs to try to reduce the lipodystrophy.

"Then we need to give them time to see if the new combination works, which takes several months. We consider surgery only if these interventions don't work." Another restriction on surgery is the patient's health. "We operate only on patients who are considered to be in good health despite being HIV-positive.

We only consider patients with a CD4 count [a measure of how strong an HIV-positive person's immune system is] of 300 or more," he says. Through Lipodystrophy Week the team also hopes to raise awareness about the problem and educate the public. "Our biggest fear is that a patient will find out their ARV medication is causing a problem – be it extremely large breasts, a 'buffalo hump' on the neck or the withering away of the buttocks or face – and stop taking their medicine.

We need people to realize that while ARVs may cause this, the drugs are life-saving and stop-ping them is almost certain death," he says. "This is why we need projects like Lipodystrophy Week.

We would obviously like to grow the project to try to reach more people but for now we're doing what we can with the resources available to us." Before her operation Thembi described herself as "suicidal" and "out of options".

Now she says she feels she will be able to live a normal life again. And it's thanks to the expertise of a group of dedicated doctors and an initiative called Lipodystrophy Week. *Not her real name.